Exploring quality of life following high spinal cord injury: a review and critique

Abstract

Study design: Review. Objectives: To explore the concept of quality of life (QOL), critique the practice and problems of assessing QOL following spinal cord injury (SCI) and to review the findings of studies into QOL for people with SCI both below and above the level of C4. Methods: Relevant articles were identified from the Medline and CINAHL databases for approximately the period 1990-2003, cross-indexing 'spinal cord injury' or 'quadriplegia/ tetraplegia' with 'quality of life', 'life satisfaction', 'social adjustment' or 'psychological adaptation'. This search was augmented through papers identified in reference lists. Articles were excluded if they were designed solely to examine the impact of a specific intervention upon QOL; or if they examined satisfaction with various life domains without explicitly linking these to perceptions of QOL. Papers were also accessed that addressed the philosophical and epistemological issues involved in QOL conceptions and assessment. Results: Review of the literature highlights the philosophical and methodological difficulties associated with the quantitative measurement of a qualitative experience; and with the assessment of life domains chosen by researchers. Analysis of QOL research undertaken among people with all levels of SCI demonstrates that dissatisfaction with life following injury arises primarily from social disadvantage. However, little research has been conducted specifically to ascertain perceptions of QOL among people with high SCI. Conclusions: Ensuring the relevance of future research into QOL following high SCI requires qualitative methodology and mixed methods. Further research is needed to determine how rehabilitation professionals can act on the findings of their QOL assessments and enhance the QOL experienced by people with spinal cord injury in the context of their environments. Sponsorship: The early phase of this study was supported by: University of British Columbia Graduate Fellowship; Rick Hansen Man in Motion Foundation (studentship); Social Sciences and Humanities Research Council of Canada: doctoral fellowship.

Quality of life after spinal cord injury: a meta-synthesis of qualitative findings

“…28 Anthropologists and disability researchers have demonstrated that Western conceptions of QOL reflect culturally specific and not universal values. 3 To enhance comparability, studies were therefore excluded if they had been undertaken outside the context of the 'Western' (minority) world. Articles were not included if their study sample was not exclusively spinal cord injured.…”

“…[1][2][3] However, while the need to understand more about the perceptions and determinants of life's quality held by people with SCI is undisputed, there have been difficulties in studying a concept that lacks a clear definition and that is perceived differently by different people, in differing circumstances and at different times of their lives. 3,4 The vast majority of research into QOL following SCI has adopted a quantitative approach, 3 reflecting researchers' assumptions that quality can be measured quantitatively; that the determinants of QOL following SCI can be reliably predicted by able-bodied researchers; and that the subjective experience of a life can be objectively and accurately discerned by another person. These assumptions have been challenged [5][6][7][8][9][10] and it has been argued that the results of these studies are both misleading and of questionable value.…”

“…11 Indeed, it has been suggested that how someone attempts to 'measure' QOL says more about their own values, priorities and fundamental orientation to life than it does about the QOL of the people whose lives are ostensibly being studied. 3,12 Quantitative research is hypothesis-driven, requiring researchers to predetermine the variables to be measured and thus to identify in advance those factors that are relevant and important to the issue under investigation. This inevitably limits the range of possible findings.…”

“…However, research, by definition, is a process of discovery -of exploring what is not known -and indeed, it has been argued that intellectuals should be challenging (not reinforcing) the paradigms inherent in their field, raising questions and unmasking and contesting conventional and accepted ideas. 13 This would seem to support an exploratory, rather than a hypothesis-driven, approach to researching an issue that is as complex as QOL; 3,4 especially when seeking to understand the QOL perceived by those whose lives may differ from the researchers', by virtue of such factors as gender, class, 'race', sexual orientation, age, religion, (dis)ability, citizenship status, education, professional status, economic status, role expectations, interests, priorities and values.…”

“…22,23 Accordingly, qualitative methods have been employed in several studies into the experience of life after SCI. 3 However, most qualitative research is undertaken with a small number of participants, leading to perceived difficulties with generalizing the findings. [24][25][26] The interpretive nature of data analysis can lead to perceptions of researcher bias and because most qualitative researchers attempt to allow their interpretations to emerge from their study data, few translate the themes they identify into the concepts previously employed by other qualitative researchers, thereby limiting comparisons between studies.…”